The ALS Ice Bucket Challenge, like any internet phenomenon, has had its backlash and the inevitable backlash against the backlash. But whether or not you like it, no one can deny that it’s one of the most effective fundraising campaigns in recent memory.
But at the end of the day, one horribly depressing fact makes it all seem like a heartwarming act of staggering futility: The tens of millions of dollars raised by fundraising gimmicks like this are drops in the bucket (excuse the bad pun) compared to the tens of billions spent by the federal government on medical research. By far the largest contributor to ALS research is normally the National Institutes of Health, a taxpayer-funded government agency which has lost 25% of its purchasing power over the last decade as an insatiable thirst for budget cuts has become the new normal on Capitol Hill.
As of this post, the ice bucket challenge has raised $70 million, which means that this year private ALS research funding will actually surpass public funding. But the problem with internet phenomena is they die quickly. Of course The ALS Association will probably receive some permanent bump from cultivating long-term donors, but no one expects this level of funding or even anything close to it to continue indefinitely.
Let’s say the ALS ice bucket challenge plateaus out after raising about $100 million. Federal government funding for ALS research has declined from $59 million annually in 2010 to $40 million this year. That would mean over five years, federal budget cuts completely wipe out the gains from all those ice buckets. Unless the ALS Association can come up with an equally successful online fundraising campaign every five years, in the long run the future of ALS research looks pretty bleak.
Once you look not just at ALS, but the broader picture of countless deadly diseases the scientific community is simultaneously trying to combat, it becomes abundantly clear how impossible it is to adequately fund medical research through social media fundraising campaigns. It’s difficult to imagine research on another disease having an equally popular viral marketing campaign at the same time—there’s simply limited space in our social media newsfeeds and our attention spans. Even if every couple years, research on one particular disease saw a surge in a few tens of millions in funding from momentarily trending on social media, it will never be enough to make up for tens of billions in slashed federal funding for disease research as a whole.
The larger question we need to ask ourselves is: How should we as a society be funding medical research?
As Republicans in Congress have forced billions in cuts to public medical research, far outstripping anything that can be raised from individual donors on the internet, one can only wonder: What about the diseases who don’t have such a brilliant viral social media campaign? Hell, what about ALS a year from now? Are we moving towards a society where public priorities like curing diseases must rely on appealing to the whims of social media trends, competing for our short attention spans in the jungle of the internet by coming up with increasingly flashy ways to raise money? Are we becoming a society where charities must devote enormous resources to trying to come up with the next viral video or trending hashtag to fill the gap of services the government should be providing? A society where resources are distributed not based on scientific expertise, but based on which cause has the best marketing campaign?
Government is and always will be more effective at raising money to cure diseases than the internet is. Tens of millions of dollars for ALS, which took a social media campaign of one-in-a-million success, could be financed by literally pennies added to an average American’s taxes.
But we don’t like this because taxes mean coercion and coercion means controversy. If I personally don’t want to contribute a few cents every year in my taxes to research ALS, should I be forced to?
The answer is yes: this is what democracy is for.
As a society we can collectively decide some priorities are too important to leave charities scrambling to scrap together resources, and we can democratically choose to raise much larger sums of money through taxing ourselves to fund public goods like scientific research. We can adjust the amount people are required to contribute based on their income, so CEOs give more than janitors. We can have scientists, public health experts, and health economists make decisions about where to spend that money so that even if I have no idea what ALS is (I didn’t before the ice bucket challenge) some small portion of my income is still directed to finding a cure.
We can get serious about curing and preventing disease, ending poverty, improving education, caring for the elderly, keeping our air and water clean. But only if we’re willing to do the hard thing. If we’re willing to say to people: “I don’t care if you don’t know what ALS is. I don’t care if even if you did know, you wouldn’t contribute 50 cents a year to cure it. You can’t get out of this by dumping an ice bucket on your head. Those of us who do care outvote you.”
The ALS Association is doing a great thing, but they are hopelessly outmatched by the callousness and political power of the budget-slashers in Washington. We will never, ever, ever be able to give medical researchers the resources they deserve, no matter how many internet fundraising campaigns we have, unless we recognize the politics of this issue and take a stand against those who would gut medical research in order to pay less taxes, who place private profits over public good. What we need is not fleeting interest from the American public to string together temporary private dollars for the latest cause. What we need is a commitment to using democracy to achieve our goals. Democracy means controversy, democracy means conflict, but democracy is the way to create true lasting systemic change.
This week I read two of the most interesting articles I’ve seen in a while. The first is an interview with the founder of Health Care for America Now (HCAN), the alliance of major organizations created to pass healthcare reform, easily the biggest public policy change in a generation, which closed its doors at the end of 2013. The second is a profile of the Working Families Party (WFP), which many credit with the surprise victory of Bill de Blasio, the populist mayor-elect of New York, who ran on a message of fighting economic inequality and is seen as a symbol of a new era in America’s largest city. You should really read them both yourself, it’s hard for me to do them justice. But both pieces made me reflect on the idea of “the inside game” and “the outside game” in politics
Some activists believe only in the inside game (lobbying, legislative analysis, running for office), while some believe only in the outside game (organizing, protesting, moving the public through mass communications). Like many others, I believe social change is only possible with a combination of both.
But more importantly, I believe that it must be the same people, the same organizations, at the same time, that play both the inside game and the outside game. We cannot be content to have some people within our movements doing electoral politics and others doing grassroots organizing. The inside players will become out of touch and unaccountable to the grassroots, while the outside players will become marginalized, ineffective and powerless. We have to build organizations that can play the inside game as outsiders. Organizations that engage with the Democratic Party and have the weight to sway elections, but that maintain independence and don’t take marching orders from Democratic elected officials.
“Like many who came out of the 1960s left, Cantor came to realize that community organizing and movement building were both indispensable and insufficient to win lasting change. He still identifies with those movements, but his distinctive aptitude has been to find ways in which the electoral process can advance progressive goals. “I feel we’re in a long line of people going back to the abolitionists: the populists, the suffragists, the labor activists, the civil-rights workers,” he says. “These were all extra-parliamentary movements. We strive to be like them, and we recognize we have to contest for these values through the state, through elections. That’s what most people think politics is. That’s our role.”
But of course elections don’t lead movements, movements precede elections. HCAN began building the momentum for healthcare reform in 2007, while the presidential election was over a year away. They managed to bring all the Democratic candidates together around roughly the same healthcare plan. Edwards’, Clinton’s, and Obama’s policy proposals on healthcare were surprisingly similar, and this was no accident. Even the differences between candidates disappeared once it came to actually passing the law (Obama opposed the individual mandate as a candidate, but ended up adopting it and fighting for it as president).
However, when movements and elections are timed well, they provide a point of access for millions who would never otherwise participate in movement-building activities like attending rallies. An electoral win becomes a symbolic moment, a turning point that gives people the feeling of an inevitable tide turning. Bill de Blasio’s stunning election in New York City may have been the first time average people felt like the momentum created by the Occupy movement had led to a real victory. After 15 years of building the infrastructure to win progressive victories at the ballot box outside of the Democratic Party establishment, the WFP was perfectly positioned as public outrage over economic inequality had finally begun to take hold.
The hard part is that movements depend on perfect timing. Movements must be sustained by organizations, but it’s immensely difficult to start a new organization in time to capture a movement’s moment of opportunity (at least an organization of the size necessary to have real power). So perhaps the most effective large-scale movement-building organizations are those like HCAN and the WFP, which emerge by bringing together coalitions of existing community groups and labor unions in order to scale up rapidly. These organizations had membership bases, relationships with key local players, experienced staff, and a fundraising machine before they even launched.
Yet simply getting all the key players in the same room is not nearly enough. Some of the biggest failings in the campaign for health care reform (loss of the public option, inadequate subsidies to make insurance plans affordable) came from the Obama administration dismissing the value of the outside game. Despite Obama’s community organizing background and his team’s talking the talk about everyday citizens getting involved, in practice the administration has taken a very insular, inside game approach to governing. With HCAN taking a subdued approach and all the outside game action coming from the Tea Party, there was virtually no pressure on the left to hold firm to the principles of healthcare reform.
“This was a huge misunderstanding by the Obama folks about power and political dynamics, just a fundamental miscalculation and blindness that was really destructive. The president’s personality is to be conciliatory. Until the summer of 2011 and the grand bargain collapsed, he always wanted to be conciliatory. He also had people like Rahm Emanuel and Jim Messina in the White House who wanted to totally control everything and did not want any on the left pushing them. But power works differently. They would have been in a much stronger position if they could say, “We’re being pushed really, really, really hard from the left, and so this is the best we can do.” And then cut final deals when they had to.”
Without the outside game holding a hard line, those playing the inside game are impossibly weak in negotiations. But being an ideologically pure and independent outsider is not enough either. Frederick Douglass famously said “power concedes nothing without a demand”. Yet too often our lists of demands are empty noise shouted from outside the building, barely heard by smirking suits inside the halls of power. Demands are only demands when they come with credible threats to their targets. One of the most credible threats is an electoral machine that actually has the capacity to end the career of a politician that crosses it. That was the source of the Tea Party’s power, and is similarly the source of the WFP’s power.
Maybe the biggest lesson from these two stories is that our work is never done. A few weeks ago, Health Care for America Now closed its doors, declaring its mission accomplished. Of course it’s difficult to keep a coalition together after the campaign that created it is won. But even with the Affordable Care Act, the US healthcare system will likely continue to lag behind most industrialized nations in affordability, access and quality. If the Working Families Party had gone home satisfied after their signature victory of ending New York’s harsh drug sentencing laws in 2004, they would have never made it to their golden opportunity last year in the aftermath of Occupy. But this speaks to the fundamental difference between the WFP and HCAN: The WFP grew from a vision of an organization, not a vision of a campaign. An organization that can play the inside game and win a seat at the table of power while maintaining its independence and values through an authentic grassroots base on the outside.
We don’t need more inside game organizations or more outside game organizations. What we need are organizations that can do both, that can stand on power and on principle.
Conservative politicians use the word “responsibility” a lot, especially to sell policies that punish people—for being poor, for being immigrants, for being sexually active women, etc. If you’re poor, it’s your individual responsibility to pull yourselves up by your bootstraps and get more money, it’s not our social responsibility to give you food stamps so you don’t like… die and whatnot.
Effective political messaging taps into the universal values we hold like freedom, fairness, compassion, etc. that go deeper than our political affiliations. That’s how you move people who might otherwise disagree with you.
Responsibility messaging resonates strongly with me. Responsibility was the single most important value I was raised with. If I could magically create a wordcloud of everything that came out of my mother’s mouth when I was a child (after removing some heavy cussing) “responsibility” would probably be the most commonly uttered word in my formative years.
But I was taught a different kind of responsibility than the right wing likes to talk about. I had a single mom who was working, going to school, and raising children all at the same time. I admired her individual grit and determination, but also the responsibility of her circle of friends who all pitched in to collectively help raise me and my little brother because my mother gave birth earlier than they did. Now my mom owns her own home and has an empty nest, and it seems like every month she’s letting a new friend crash at her house until they get back on their feet. My understanding of the word responsibility comes from the incredible women I was raised by. It means stepping up to care for our communities in times of need.
The kind of responsibility I learned growing up was not my responsibility to myself, but my responsibility to others, to my family, to my community. In elementary school I was packing my own lunch, doing my own laundry. These are things you can reasonably expect a 9 year old to do, the basic tasks of taking care of oneself to not be a burden on others. But by the time I was a teenager, greater responsibilities were expected of me. I was cooking dinner every night for the family, making sure bills were paid on time every month. I stepped up because my family needed me.
I think the right-wing is stuck in what I would call Elementary School Responsibility. It’s a worldview where responsibility is not about community, but about the individual. Or as my mom would say, “How to wipe your own ass”. In their worldview, responsibility is about taking care of yourself alone. It’s making sure you personally go to a good college, get a job where you make a lot of money, own things like houses, and don’t end up in jail. Apparently if you get any help doing any of these things, you’ll never learn the true meaning of responsibility.
Unfortunately, this definition of the word “Responsibility” has become the dominant one in America. But it wasn’t always this way. On a hunch I looked up historical trends in the usage of the phrases “Your responsibility” and “Our responsibility” in American texts using Google NGram.
“Our responsibility” was the more common usage through most of our history. The phrase suggests collective action to care for the needs of a larger community. It grew gradually over time, with spikes during national crises like WWI, the Great Depression, and WWII. “Your responsibility”, meaning taking care of yourself, takes off suddenly in the early 1970’s and becomes the dominant usage at the beginning of the Reagan Revolution.
What’s fascinating about this graph is that it mirrors historical trends in income inequality, union membership, the real value of the minimum wage, and other economic data that shows that sometime in the early 1970’s there was a change of direction in America. Something snapped, where average working families’ incomes no longer grew along with the nation’s economic productivity, as they had throughout American history until that point. For the last 40 years we’ve been moving rapidly away from a “We’re in this together” economy and towards a “You’re on your own” economy.
Those terms were coined by economist Jared Bernstein, but we could just as easily call it an “Our Responsibility” economy and a “Your Responsibility” economy.
This didn’t happen naturally. Somebody jacked the word “responsibility”. Or more accurately, a whole generation of right-wing politicians, academics, lobbyists and media commentators did, intentionally and effectively, as part of a comprehensive effort to slash the social safety net, gut regulations, cut taxes on the wealthy and lower wages. Words matter. As a people, we’ve allowed our language to be corrupted, and have abandoned “our responsibility” in favor of “your responsibility”.
Now I think making sure over 30 million people can see a doctor when they get sick even if they can’t afford it is the definition of responsibility. I also think the Republican idea of responsibility these days looks like this:
But we can take back the meaning of responsibility, just as we can correct our course after four decades driving down the path of widening inequality and cold individualism. We can provide education for our children, take care of our loved ones when they’re sick, and allow our elders to rest. We can, and in fact, we must. It’s our responsibility.
Although most of the chatter around Paul Ryan and his radical budget proposals has focused on his attacks on Medicare, the more brutal cuts he put forward are actually to Medicaid. The key distinction is that while Medicare is a universal social program whose benefits go to all elderly Americans, Medicaid provides healthcare primarily to low-income people, and thus must be extra offensive to people like Ryan.
In his convention speech Bill Clinton stressed how these cuts to Medicaid will actually affect many middle-class families too, because it includes funds for nursing homes and disabled children of all income levels.
Why would he say this? Because it makes strategic political sense. Because large swaths of Americans at all income levels consider themselves middle-class, entitlements that benefit the middle-class like Social Security are politically difficult to cut. Meanwhile slashing benefits that go to the poor, (as Bill Clinton should know after gutting the old welfare system) is much easier for the public to accept.
Knowing that the right-wing will always regain political power at some point and want to start slashing social programs, progressives should push for universal programs that also benefit the middle-class rather than means-tested programs that only low-income people qualify for.
For example, this would mean arguing for lowering college tuition for all students rather than expanding financial aid. (It also suggests single-payer healthcare would be much harder to get rid of by future conservatives than the subsidies provided by Obamacare.)
But wait– isn’t the whole point of social programs to redistribute wealth to those most in need? Why add a large extra cost to help people who aren’t poor?
First, there’s the strategic/political reason. If we really believe things like healthcare or education or retirement security are human rights, then when we score major victories to expand access to them, we have to make our victories last. The best way to prevent future cuts is to create universal programs that people actually see as one of their basic rights as Americans, like Social Security.
There’s also an economic/policy reason. Low-income families are essentially punished when they manage to struggle their way into the middle-class because they lose government benefits they no longer qualify for. This is the precarious reality of being lower-middle-class in America, where your family faces extra burdens just as you are barely beginning to achieve the American dream. If you instead make things like college education or healthcare guaranteed at all income levels, the government is no longer essentially penalizing people for making it into the middle-class.
One potential problem is that making a program universal necessarily makes it more expensive and thus creates political challenges to passing it in the first place. However, most middle-class families already pay for things like college and health insurance, so are likely to accept paying taxes to get them for free from the government, in the same way that most people don’t mind payroll taxes to fund their Social Security benefits, because they would have had to save for retirement anyway.
On the other hand, many middle-class people might prefer privately financing education or healthcare rather than publicly financing it because of their negative views towards government. But those negative views towards government have mostly been created in the last few decades by right-wing messaging that stirred up middle-class resentment towards low-income people for being dependent on government aid (“welfare queens”, etc.) The only way to counter it is by showing middle-class voters that the universal provision of economic rights like education and healthcare is not just about helping the poor, but about stopping the rise of economic insecurity being experienced by all Americans.